Vague Head

Yesterday I posted the following status on my facebook:

Somewhat “vague” today. Not bad, just somewhat purposeless and lacking in any sort of knowing what to do. I’m sure there’s something must need doing, but I haven’t quite figured out what it is. And my head’s doing that “wandery” thing where it can’t quite figure anything out!

And later, replied to a comment on that post with the words:

I’m in one of those moods where I want to write stuff. But the head is blank. There’s nothing there. The little translation people in my head who sort the words have taken a day off.

As it turned out, I wasn’t wrong that the little translation people had taken a day off. By the time I got into bed my spoken words were becoming somewhat nonsensical, and by the time my husband had fallen asleep, they’d gone completely. I didn’t manage to get any sleep myself until nearly 4 am, so it was a rather tedious night. Even by this morning I still wasn’t able to ask him what time he’d be home from work because I couldn’t summon the energy to form a sentence that long and complicated.

And I’ve spent most of this morning in a state of some sort of shutdown. And that sort of “sad” feeling pervades. And everything seems to be a bit triggering and there are so many things on facebook that make me angry but I don’t quite have the capability to debate them because I’m right at the start of this process and I haven’t yet got to the stage where I can analyse and present the arguments in a way I want, so I read that according to the labels I’m supposed to be “high functioning”, because I could speak as a child, and I feel so desperate because I can’t remember how to work my socks and it’s nearly 2 pm and I’ve not yet been capable of eating or drinking anything, but that’s OK, because I’m “high functioning” so my life must be brilliant, like those autistic people in silicon valley who can do computer things without crying and so on. And everything’s all jumbled up in my head and I can’t really quite get the spoons together to make sense of it all, so I just sit at home in my horrible dark messy flat, staring at the forms for the state benefits I don’t want to claim because they scare me so much but I know I have to because I cannot hold down a job and my husband’s working flat out and we’re still not breaking even. But it’s OK, because I’m “high functioning”, and my sort of autism would be described by most people as “mild”. And there are parents on groups talking about their autistic children as some sort of tragedy and saying that because their children are “severe” they will never be able to live independently and that the adult “mild” autistics don’t understand. Even those of us who cannot live independently – independent living is a distant dream for me, a world that I might never attain! And they even have children at all, which, to someone like me who was never able to have any, seems terribly ungrateful. And I see the success stories and the smiling graduation pictures and I remember how hard I worked (not at the subject, but at being able to live) to get through my degree, and the early morning drinking to enable me to cope with the world, and the picture that everyone else saw of a smiling person in mortarboard and gown and how much damage I was doing behind the scenes by pretending to be strong that by the time I was in my late 20s I was downing bottles of whisky and packets of pills in the hope that I wouldn’t ever wake up again.

And all this goes round and round in my head like some sort of mess, from which I hope, one day, to extract some sense, some coherent argument, some way of trying to explain all this to people that they will understand, that they will think about. And how important it is not to pressurize autistic people into appearing “normal” from the outside because it is doing us so much damage on the inside. And I sort of hope that people will realise why all this stuff is so triggering and difficult for so many of us, but I realise that many of them probably won’t, and just like I’ve had to learn in other areas of my life, there are times when I really should hide the offending posts on facebook and move on, because my own quality of life is often so poor that I need not to make it poorer by staying awake all night, nonverbal, triggered by all this stuff, and wishing that I’d never been born because my life is such a bloody awful mess. And even as I type that sentence I’m worried that I’m lining up “nonverbal” next to “triggered” and so on, and I want to go back and change it (but I don’t have the spoons) because it implies that nonverbal (which really should be called nonspeech anyway because typing is verbal, just not spoken) is bad, and it isn’t, at least not from the inside – it feels calmer and less stressful than trying to maintain conversation, which is often hard deliberate work. I usually find that I start to feel worse and worse when I’m trying to hang on to speech, but feel much better once it has gone, an inner peace that isn’t available when trying to communicate by talking. Yet so much of the outside world seems to see this silence as a bad thing. And I am confused. And now, reading that paragraph back, I realise how social media, which is largely responsible for triggering many of these thoughts, is simultaneously wonderful and difficult, because without it I would spend most of my life without any human interaction at all, but with it I am exposed to things that are often difficult to cope with. And there’s another whole blog post to be written about that too.

And as I type this I wonder whether even to post it. Because I want to make proper, reasoned posts about all these things at some point, and I want to explore as many angles of the debate as possible. Despite my never having succeeded in academia, I am an academic at heart, a scientist, a person who tries to be as rational and logical as possible and to try to understand the opposing point of view in arguments, even if I subsequently dismiss that point of view.

But I am also just a person. A very broken person, with a lot of baggage still to unpack, a lot of self-esteem issues to deal with, a lot of practical problems to tackle, and a very very struggling head that doesn’t even think in words and needs to expend vast amounts of energy to translate the concepts and pictures and feelings into words in order to communicate them to other human beings. Even then, I don’t always get it right – it’s clear from replies to things that I say on facebook that others don’t always understand what I mean and maybe I’m not clear enough.

Note: I ran this post by my husband, who suggested that I add the words “I do understand that people who say ‘you aren’t broken’ are trying to be helpful but it is often the opposite of helpful so please, if you would like to know how to help, you can start by not telling me ‘you’re still you’ or ‘you’re not broken.’ Thank you.” (There’s a whole blog post to write about that at some point too – the extent to which I’m “me” or “broken” is massively complicated in my head and I need to work it out for myself, which will take some time).

I will do the proper blog posts at some point. The ones on my list, in which I discuss functioning labels, in which I discuss speech, in which I discuss how damaging internally it can be to an autistic person to try to behave socially in the same way as most other people can, and about how some of us who have been doing it unknowingly for decades have struggled to work out why life has consistently been so tough and gone so very wrong and have ended up so very broken and burnt out as a consequence of putting in so much effort for such a long time.

But I need more time for those. I need the soupy mess in my head to settle, so I can see. I need to do it when the translation mechanism is running smoothly and my head is clear and I’m not dealing with so many other things at once.

If I do decide to post this, then it will feel like one of the “braver” (to use a word that others have used to describe this blog) posts, because I am raising issues that are difficult, and I’m doing so without even having the capability to debate them, or with the backup of sufficient knowledge in my head, which feels like a rather frightening, and maybe risky, thing to do. But one of the things I was determined to do at the outset of this whole blogging enterprise was to try to be honest (or, at least as honest as I can be – there are things I have to leave unsaid sometimes to protect other people because my story is my own, to use as I please, but where it intersects with the lives of specific others I sometimes have to tread more carefully).

Maybe, however, it will be worth it if it encourages others to think about these issues. Although I know I’m already triggering myself massively just by typing this stuff up, never mind what will happen if I post it.

Perhaps the very best course of action at this point would be to go and see whether the connections in my head are working sufficiently well to make a cup of tea. And if they’re not, to get someone on social media to talk me through the process so at least I’ve had a hot drink today, even if nothing else!

Fragments…

67-2017-02-15-14-27-23Sometimes my words flow smoothly and fluently, but sometimes they don’t. Even the written ones can sometimes be difficult, especially if I’ve used them a lot. The system needs time to reboot. I spent nearly all of yesterday writing, information for the forthcoming assessment. As a result, today, I’m aware that written words are not flowing terribly smoothly and even the skeletal draft blog posts that I have I don’t have the power to edit them and work on them before they go out because my head is simply saying that it needs a rest. The busy times of last weekend, then yesterday’s endeavours, have left me in need of recuperation.

Often, when I can’t manage to write prose I will try to make some sort of a poem. When things are at their worst, I can’t even manage that, and I am left with a few fragmented words. Here are four such fragments, which, I suspect, will never be completed, because their moments have now passed…

 

Wanting to Write

So many things
I want to blog about.

So many feelings
I need to sort.

I have a list
Of posts I want to write

But it only works sometimes.

 

 

Old New Autistic

Being newly autistic is very very tiring.
Except I’m not newly autistic.
I’ve been autistic for over 45 years.
So being an old autistic is tiring.

 

 

Slowly Words

The words come slowly this morning,
Often in a jumbled order.
Back to front, front to back.

No wish to talk, no need to talk.
I stay quiet.

Even the written ones are an effort.

 

 

Overdid Stuff

So
Crash

Overdone
Too much.

Phased Process

62-2017-01-12-19-01-27I hope you will forgive a somewhat long and indulgent post today. Eventually I’d really like to produce material that will be helpful and instructive and so on, and I might even, once I have things straight in my own head, produce a book, or maybe even another, more “generally informative” blog. There are so many issues that are so important to investigate and to consider – everything from how best to nurture autistic children, through to how to support those even older than I am who make the discovery that they are autistic; a whole range of traits including communication issues and sensory sensitivity and executive functioning and so on; and a huge amount of discussion to be had on all manner of other issues that are only just finding their way into my head and I can’t even quite find the words for yet.

For the time being though, I’m still in the process of trying to get my own life sorted out, and some of these writings form part of the process. I currently have no support from the official services at all, no counsellor, no therapist, nothing, and so I’m aware that I sometimes use this space in lieu of such support. So some of what I write might just be pure waffle that I needed to write somewhere and here was as good a place as any. Some of the time I’m just trying to get things straight in my own head.

In the last week or so I’ve noticed things have changed again. Since the appointment date was fixed for the next assessment (my third try at getting a formal autism diagnosis after the first assessment was stopped by the assessor and the second one was cancelled) I’ve become noticeably more anxious again. My appetite has plummeted, having recovered somewhat, and I’m finding sleep less and less easy again.

However it does feel different from the last time I was waiting for my appointment, for several reasons, and I’ve been trying to understand why. I’ve also been looking back over the last six months, which seem to have comprised a series of “phases”, all of which have felt slightly different, and, I suspect, are part of the balancing process as my autistic neurology comes to terms with discovering, er, my autistic neurology!

The irony of discovering that my head isn’t very good at coping with change by discovering that I have the sort of head that isn’t very good at coping with change and having to cope with the change that ensues from that discovery is not lost on me!

So, we go back to July 2016. Back to the days of “normality”. Back to the days when everything felt ordinary, much as it had done for most of my life. A knowledge that I wasn’t well again and was possibly heading for another breakdown. A confusion as to why I couldn’t get my act together. And a general constant low level depressive mood and anxiety that I was so used to that I didn’t even notice it. I had a figure “zero” on my mood chart, meant to indicate my “norm”, what I regarded as a euthymic mood, but, in retrospect, it was far from “normal”, just what I was used to, as I eventually realised a couple of months later. During those times I would wake each morning feeling the usual struggle, the usual wonder what the point of it was, and the usual knowledge that everything was difficult and hard work, but that was just the way it was and things had to be done. That was normality.

And then we get to August, and going away from home. And my mental health (as I assumed at the time) starting to disintegrate. And, despite the few rumblings earlier in the year and a general “bit eccentric” sort of idea in my head, the “polite disbelief” at the initial concept of being autistic, exacerbated, I suspect, by me not really knowing what being autistic actually meant. I had no more knowledge than most of the rest of society at the time, possibly even less, owing to not having any children and being so uninvolved with the world. But by this stage I felt so absolutely dreadful that I was prepared to listen to almost anything to try to work out why my life kept going so very very wrong, and when you find yourself, as a 45 year old, behaving in a way that would be more naturally associated with a stroppy child and you have no way of controlling it or stopping it, then maybe it’s time to try to find out why.

So there was this initial feeling of disbelief. And also of the notion that I probably wasn’t actually really genuinely “autistic”, but just had one or two traits. I was one of those folk who was just a bit sensitive to life and because I was so mentally ill I just didn’t cope very well. I didn’t think, initially, that I would ever actually define myself as autistic, but saw the suggestions as merely an extension of eccentricity. Again, I still didn’t really understand the nature of the autistic spectrum, and neither did I have the first clue how many of my “eccentricities” would actually start to be revealed as autistic traits as I started to research.

And then I read the book with the list of traits mentioned in The Discovery. And started to take things somewhat more seriously. And went from “this is a side issue that might be useful to be aware of but things will get back to normal soon” to “mind blown, this is my entire life turned upside down”!

And the “polite disbelief” turned to “polite belief” turned to “******************” (there is no word that adequately describes suddenly discovering, after 45 years, that your entire life has been governed by your having a different neurology from the majority of the population, that you’ve been fighting all your life, and that you’ve discovered all this in a matter of weeks and your entire world has completely changed)! And there was huge huge huge shock. And even more huge shock as I started to research just how MANY autistic traits I had, and started to discover about all sorts of things that I thought were just me, weren’t. The whole “autism nicked my schizzle” phase!

And I went from waking up each morning wearily wondering how much more of this difficult life I could take, to waking up (when I managed to go to sleep at all) with my heart pounding so hard I thought it would actually jump out of my chest and this word “autistic” just swimming, almost meaninglessly, round my head. The whole sense of shock and disbelief and whatonearthisthisaboutthen still raging through my system. A bit like when someone dies and you get those few seconds each morning before you remember and then you suddenly remember it all over again and your system goes into shock once more.

And by this time it was early September. And I was struggling to cling on to anything normal at all or to think about anything other than autism, and my Amazon basket was full of autism books and I couldn’t eat or sleep or do anything because my whole system was so utterly overloaded. I went through lists of traits over and over and over. Read blogs, books, anything I could get my hands on. My entire world became about autism, almost to the exclusion of everything else.

And hardly anybody knew what was going on. My husband. A handful of friends. The whole thing seeming so utterly implausible that I couldn’t possibly mention it. I was trying, even, to work out how to even comprehend that I could ever even imagine that I really was autistic. It was surreal, like I was on some sort of weird drug that made the world feel like a total dream. Shock shock shock. Huge shock. What? Me? Really? Over and over. This shock. So obvious. So so obvious. But such a huge shock. Why did this take so long? What now? What even is it all about? My world collapsing.

Then I went to see my doctor, my GP. And the minute we mentioned the word she said “Of course!” and it was totally obvious to her too. And then I entered this time of huge relief, and we started to go back over my life, over 4 decades of memories of stuff happening that had never been explained, and suddenly it was all explained. And I started to chat to a very tiny group of people, and started to unpick my life and started to work through it all. And the feelings kept coming, and I tried to describe them in Various Feelings, and we started to wait impatiently for the formal diagnosis to arrive.

And for most of September and October I hardly slept. And hardly ate. I spent the night times, slightly bizarrely, googling pictures of goats and posting them on my facebook wall. My husband brought me food each day and I nibbled at what I could, which wasn’t very much. My system was in such shock that I could barely function. I cancelled almost everything in my diary as my system just started to close down. I realise now that this was going into burnout and all my energy had just gone. My life seemed so totally crazy and totally different. And I kept wondering if anything would ever feel even vaguely “normal” ever again. And to top it all, the hot water broke in our flat and our living conditions descended from “chaotic” to “borderline disastrous”!

Oddly though, around September time, something else did happen which showed just how much of a toll the masking had been taking. Although I was in a really really strange state, the general level of depression lifted massively. Simply knowing, and understanding, took a whole level of depression away. This, I suspect, was the depression caused by acting, by suppressing who I really was, and had been with me for so long that I didn’t actually notice it was there until it lifted. There was also this sudden feeling that I could be gentle with myself and could stop the frenetic pushing to do everything and to be everything to everyone and to achieve achieve achieve, which had been the cornerstone of my life.

And then I discovered that if I stopped trying to push in that way that I could let myself relax in a way that I hadn’t done before and that if I stopped trying to sit still then my body moved in ways that society had told me for years were strange but from the inside felt totally right. And I spent up to two hours a day rocking and bashing myself on the sofa and all sorts of things emerged from me (I’ll do a post about it sometime) that had been there all along, hidden, just waiting under the surface to be allowed out. I discovered that even after 4 decades of learning and suppression, all my autistic behaviours were there and that all that had happened by me not flapping my hands or by making myself cope with sensory overload to appear “normal” was that I’d been getting progressively more damaged and ill and had sometimes used maladaptive strategies such as alcohol to try to deal with the anxiety.

And all through the autumn I gathered evidence for the assessment, which was set for the end of November. I called my mother and learnt things about my early childhood that I hadn’t previously know and which provided yet more evidence for the “autism hypothesis”. I read book after book, all of which confirmed it over and over and over. And anxiety was heaped on top of anxiety. And the only way I could settle at all was to drink and stim (note: do not inadvertently flap hands while holding a glass of wine – it doesn’t end well for the carpet or the wine)! And there were so many other things going through my head – sadness and anger and relief and excitement and things I’ve written about before and still can’t quite explain properly.

And then the first assessment came and the ensuing disaster plummeted me into crippling depression at the start of December (the full story is in part B of the Blog Guide). I had a series of long shutdowns and episodes without speech, and eventually the spell was broken and I went from no sleep to oversleeping and gradually starting to eat again as my body started to try to repair itself. That phase is the one that has recently ended. And then I made the decision to go public about being autistic and started this blog.

At the start of December I wrote about how Time Stood Still, and I was still in a state of disbelief and still felt that I would, at some point, wake up and it would be August again and I would just have had a really strange dream. I’d gone from disbelief, to tentative belief, to huge shock, and massive relief, and lifting of long-normalised depression, and enormous anxiety, to crushing devastation and invalidation, to starting to fight back, and still my head wasn’t really there, wasn’t really prepared to believe I was autistic without a diagnosis.

But things are different again now. Partly because it is a different year and we have been through the annual time of the short days and I am now, just occasionally, starting to notice the outside world again. Partly because I survived the very very bleak times following the first assessment. Partly because I am now publicly autistic and the reaction to my disclosure has been so overwhelmingly positive and accepted that it has gone a long way to help with the damage done at the first assessment. Partly because I have now learnt so much about autism and am finding strategies to find my way through and have started to engage with the autistic community and to discover how many of my own issues are common to other autistics. Partly because I am not now viewing the forthcoming assessment as a definitive point – I’m aware that getting a formal diagnosis might actually be a long and arduous process and from what I have read, this is not unusual in older people, particularly those assigned female at birth. Partly because there are indications that I might be emerging to some extent from burnout and I do have slightly more functionality than I did a few months ago. Partly because I am starting to learn what my autistic traits are and am learning to work with them rather than fighting against them.

But possibly mainly because I am now writing about being autistic and producing my own narrative to help with the process of discovery (and occasionally writing long indulgent posts like this one). I am learning to talk about it in a way that I would have found unthinkable back in September when even typing the word “autism” into a search seemed so alien and scary that I’d have to go for a little lie down afterwards to recover. I am finding out that going through this huge range of emotions from ecstatic jubilation to suicidal depression is “absolutely normal for the newly-discovered middle-aged autistic” (and probably newly diagnosed autistics of all ages and, to an extent, their carers too) by continuing to read. And, I’m starting to think about a way forward and very very gently getting back to one or two things that, to me, signify “normal life”. It’s slow, and the path is very wobbly and up and down, but it is going, gently, in the right direction.

None of it is particularly easy. And my autistic brain is still fighting furiously with my knowledge brain as they try to reach some sort of equilibrium in my head and sort out what on Earth to do about everything. But I sometimes think that they might, eventually, find some sort of way of working together.

And in the meantime the only thing to do is to accept this latest phase of anxiety regarding the assessment and to cope with it as best I can. I don’t know how many more phases there will be to go through before life achieves some sort of “new normal” and neither do I know when or what that will be. Maybe I will need to write more “head sorting” material in the future in order to make sense of it all and I’ll have a whole new analysis of the process in a few months’ time!

This blog is an interesting beast. No matter how much I want to write about some things and no matter how much I plan, sometimes my head just needs to write what it needs to write.

And letting it is part of the process of discovery!

Sudden Illness

40-2016-12-31-12-56-37Around two years ago. Sitting in a pub. With a good friend. In front of me on the table a plate with a half-eaten lamb steak and a small pile of chips. The remains of a pint of beer.

It was a lovely evening. A pleasant pub. My kind of food. My friend and I had spent a relaxed day together at his place. A bit of lunch, an afternoon catching up on news, chatting. And then we’d decided to walk the 15 minutes up the road to the local pub for supper. We’d ordered beers, decided on food, waited for it to arrive, and while we waited, seated opposite each other at the wooden table, we’d watched as other people around us received their meals. Our food arrived. We ate. We continued to chat.

And then, out of nowhere, I suddenly, and inexplicably, felt really really ill.

I didn’t know whether I was going to pass out cold or to be sick or maybe both or what. But I felt absolutely dreadful. I stopped eating instantly, then felt myself flush hot all over, and apologised to my friend, explaining that I was having a panic attack and I was really really sorry about it and that these weird panic attacks had been happening all my life and that was just the way it was. And I was somewhat annoyed with myself for getting into such a state on what was a lovely evening with a friend I like spending time with.

He was cool. He already knew I had mental health issues and assured me that it was OK and he was fine with it. No problem. No big deal. I seem to have been lucky with most of my friends in that they generally seem pretty chilled about most of my oddities. I calmed down a bit, focusing on my breath as I’d learnt to in mindfulness classes, and allowed my leg to jiggle under the table, as it almost always does in such situations unless I make a big effort to stop it. His being relaxed about my state of panic, and my focusing on breathing, meant that I recovered sufficiently to stay in my seat while he finished his meal and I apologised profusely for leaving half the food he’d just bought me. I sat and sipped my beer, hoping that the alcohol might assist with the calming process.

We then left the pub and walked the 15 minutes back through the cold evening to his place. He offered me a glass of wine. I took a few sips and knew that I wouldn’t be able to manage any more. All I could do at that stage was rather feebly say that I needed to go to bed.

I spent the first half of the night lying in bed, feeling a real need to shake, but knowing that I felt so ill that I should try to lie still, to focus on my breathing, and to keep calm. I eventually drifted off to sleep, and woke the next morning feeling drained, but basically well again.

This sort of thing had been happening in restaurants and pubs for years. I cannot even begin to count the number of times I’ve ended up sitting on pavements outside restaurants, having had yet another of these mysterious panic attacks, desperately trying to keep it together for as long as socially necessary, then going home, ending up sick, or unable to focus on anything, lying silently in bed just waiting to feel better. I have always assumed that’s a normal part of going out for a meal and, I think, been vaguely surprised when I’ve encountered people who go out for dinner and don’t collapse afterwards!

It’s also happened rather frequently after dinners in College. From time to time I dine on High Table at my old College in Oxford. It’s a very pleasant evening, with interesting people, good food, and sometimes dessert with port in the Senior Common Room after dinner. I like these evenings very much. But I have frequently needed to leave the Common Room and walk round the quad for a bit to get fresh air and calm down. I’ve had moments, almost mid-sentence, in conversations with small groups of people where I’ve had to use every ounce of energy I possess not to end up collapsed in a heap on the floor. I’ve sometimes gone and stood outside the door and spun round in circles on one foot, which somehow has helped, and I’ve even fallen fast asleep on the sofas – I have a photo somewhere that another friend took one evening when I completely crashed out while everyone else was still enjoying after dinner drinks. I’ve also had nights in bed afterwards feeling, as I did after the visit to the pub, inexplicably absolutely terrible.

I was prompted, once more, by the incident in the pub with my friend, to do some experimenting to see whether I could find out what was actually going on. I observed that these incidents happened with greatest frequency after trips to the pub and dinners in College. I tried to think what was different about these occasions from the times I had similar dinners at home. The only things I could come up with were the different drinks. At home I drank wine. Out of the house I also drank beer and port.

My theory was that I was having some sort of bad reaction to something in dark beer or port. Maybe an allergy? So I went to the supermarket and bought a selection of the darkest, roughest beers, and a bottle of port. I then went home and for several nights sat in front of the telly with a few beers. Absolutely fine. Then I did the port. Also absolutely fine. Together with a bottle of wine in the middle for good measure and a whisky chaser. Also absolutely fine. Maybe a bit sleepy after the last experiment, but nothing approaching the state of panic and illness I got when I was out.

So no beer allergy. No port allergy. It wasn’t the drink. I started to cut down the amount I ate while out, but that didn’t really help either. Eventually I gave up again and these strange and debilitating episodes of illness just continued to be another of the “unsolved mysteries” that have characterised my life through the years.

Until recently. Until I learnt about overstimulation. Until I realised just how much energy it took to talk to people while in an environment full of other people. Until I found out that looking at the eyes of the people I was talking to was draining my batteries at a rapid rate. Until I realized that there were vast amounts of improvised conversation involved. Until I discovered that when I reached that level of tiredness I needed to shut down and stop talking. I needed to be alone. Until I tried to talk during some of the times I spent lying silently in bed after these incidents and realised that the words were gone or at the very least, difficult to produce. Until I learnt that lying still was the absolute worst thing I could do at these times and I needed to allow myself to rock, to flap my hands, to bash some part of myself repeatedly against a cushion.

And the mystery of the sudden inexplicable illnesses was solved. That was how I felt immediately prior to going into shutdown. The effort of continuing to behave in an appropriately social way when my system was completely overloaded was what caused the illness.

And as I investigated still further it became apparent that this wasn’t just about the pub. It had been going on all my life, right back into childhood. As soon as I knew what I was looking for it became so easy to see that I was amazed nobody had spotted it earlier!

The mystery of the sudden illness finally solved! And, happily, no need to eschew the pleasures of a pint of beer or a glass of port! I’ll need to develop other strategies to deal with social and sensory overload, and I’ll need to do experiments, save energy, be gentler on myself, but the problem, like many of the problems I’ve had throughout my life, will almost certainly be easier to cope with now that I know what it is!

Bad Day

39-2016-12-30-14-51-49Some days I can write quite coherent, long, and articulate blog posts. Some days I can’t. Yesterday was one of the “can’t” days.

In fact, yesterday was a “can’t” day in general. I spent the morning in bed, hardly able to move, unable to speak for stretches of time, and feeling very very low, very out of place in the world, very sad and angry. Most things I encountered either on social media or the television (with the exception of the film that I’m watching over and over again on DVD) just made me even sadder or angrier. Something on the news about people who worked hard getting rewarded – which is so counter to my experience, having worked my butt off all my life and landed in middle age feeling like it has all been for nothing. Some article online written by a parent going on about the tragedy of her kid being diagnosed autistic – believe me, it’s a greater tragedy not to know and to waste your life chasing impossible dreams. Even the autism groups and blogs about people who received their diagnosis, people who receive help and benefits I can’t even manage to apply for – I have no diagnosis and I feel like I arrived really late to the “autism party” and everyone else knows what to do about it and I don’t because I’ve spent my life learning to be somebody I’m not and I don’t actually fit anywhere at all. I wanted to debate and engage and work out how to say things without it coming across as rude or accidentally insulting somebody or something, but I could hardly find words for anything. I stared at the maths assignment that I was utterly unable even to contemplate and the running shoes and the viola I didn’t have the energy to use and the washing machine I didn’t have the energy to work out how to fix and the list of people I need to e-mail and thought about the things I want to do and how much I do want to do them but how hard some of them might be for me and what I can commit to. I sat for over an hour with my phone, unable even to type a facebook status saying “Bad day today”. The fight was gone. I wished I hadn’t woken up at all. I didn’t even have enough translation power to make the words I’ve now just typed from the muddle and feeling of bad bad angry sad going round my head in a constant loop.

The brain and the iron willpower, as usual, kept me breathing. By evening I was starting to emerge from the shutdown. I managed to eat the dinner that my husband put in front of me. I managed to write a short poem-thing. I didn’t manage to post it on the blog because the effort of working out how to use the computer was beyond me. So I’m posting it today instead. And pulling myself out of the abyss – again.

Today not good.
Words very hard.

Angry about so many things.
Sad about so many things.

So many bad thoughts.

Can’t even find words to say.

My life such a waste.

It is all too late.
Damage all done.

Whole morning shut down.
Jobs not done.
Life falling apart.

Like I am.

Can I Sing?

35-2016-12-29-22-15-02The question above isn’t one regarding my musical ability. I wouldn’t call myself a singer in any real sense, but I can be a moderately useful choral soprano from time to time, got grade 8 in singing when I was in my late teens, and have occasionally sung solos, although that’s all very very rusty these days!

However, I have asked myself that question on a couple of occasions recently, most specifically when I’ve “lost the words” (I’ll do a whole blog post about that at some point, but regular readers will by now have picked up that I have times when I am non-verbal and unable to speak).

The first time I wondered about singing was when I had around 3 hours of lost words while my husband and I were staying in the hotel (see Balancing Act), but by the time I had thought to consider the question my husband was asleep and I decided that wasn’t the moment for the experiment. Picture the scenario – you’ve just fallen asleep after a busy day fetching food and coffee, and you’re suddenly awoken by some sort of noise, and then you have to put your glasses on to read the words your wife is typing to you on her phone to discover that your valuable snooze time has been interrupted to conduct some sort of bizarre singing experiment! I’m barmy, but not quite that barmy!

Anyway, last night I lost the words again. Not really surprising after the week of the cancelled second assessment and all its attendant strife (there was yet another round of telephone calls and crossed wires yesterday afternoon). I gradually observed the feeling, familiar since childhood, of first a sort of sick exhaustion, then being (as I’ve always assumed) simply too tired to talk. I’ve spent my life assuming that everyone gets too tired to talk, and that’s just normal.

Since my husband was out late last night working (there’s a reason I don’t wake him when he’s asleep), I was in the flat on my own, so had the opportunity to try the singing experiment. It wasn’t a sophisticated experiment – there was an old episode of Top of The Pops burbling on the telly, and I thought I’d see what happened if I tried, from my non-verbal state, to sing along.

The answer was this – if I tried to sing with the words of the song, then nothing. Couldn’t do it at all. Like there was no connection, something unplugged (I really do want to try to work out how I can describe all this properly sometime, but for now it’s the best I can do). So I tried without the proper words – just “la la la la la” type of thing. Also nothing. Not a hope.

But if I just forgot about the words and hummed the tune alone. Absolutely fine. Like normal. No problem at all. Just like normal humming. Totally wordless, but all completely intact from a pitch and music point of view.

It really is the actual WORDS that are the issue. I have some sort of circuitry issue with making words. Which is, of course, why social events and conversation are so absolutely exhausting. Even when I’m apparently speaking fluently, I’m working overtime to make that speech, and sometimes I just can’t do it at all.

It’s all very interesting!

Written Therapy

07-2016-12-14-15-01-43I wasn’t going to post today. It’s been a slow day, a very slow day, and it has taken until 5 in the afternoon for the fog to clear from my head sufficiently for me to form proper sentences.

I’m also aware that I’m in quite a negative place at the moment. The lack of validation at the truncated assessment two weeks ago is still hitting me hard. I’m still struggling with the huge dissonance caused by uneven recognition of my autism. I have spent almost 20 years in the mental health system in one way or another, seen numerous doctors, counsellors, psychologists, psychiatrists, community psychiatric nurses, cognitive behavioural therapists, mindfulness teachers, and volunteer and charity mental health workers. In two decades, NOT ONE of these people has even mentioned autism to me. Not a single one.

The recognition that I am autistic is the single most important thing that I need in order to start to repair the damage done by 4 decades of masking, the thing that, had it happened years ago, could have helped me live a happier and better life. But in all those years, nobody said anything at all. I was sent for CBT to enable me to go to supermarkets and do shopping – it taught me immense willpower and fortitude, it taught me that it was normal to feel sick and exhausted. So I ploughed on through life and that was my normal. I smiled and assumed everybody felt the same. Until the point when I could no longer manage and my body gave up on me and I ended up ill and collapsed.

And two weeks ago, having even told the assessor that I’d spent my whole life asking for help the best way I could and being told I was so intelligent I’d be able to cope, the same thing happened again – I was told that my levels of articulacy (when asked a question to which I have a well-scripted and oft-rehearsed answer) were inconsistent with an autism diagnosis and the assessment was stopped after less than an hour and I was told that I’d have to return in January to see someone else as I was “so complicated.” I’m still trying to write it up fully, but it is immensely triggering and difficult.

Then I went ahead with starting this blog and full disclosure. The decision to disclose was an easy one – not because it was an easy thing to do (outing myself about something of such massive proportions without official say so was way beyond my confidence level that I would even be believed) but because I couldn’t figure a way that life would be worth continuing with if I didn’t disclose. In the perpetual debate as to whether to choose a rock or a hard place, the decision is made somewhat easier if the rock is freshly erupted from a volcano and is still on fire!

And so I disclosed. And received a whole host of positive responses – Of course you’re autistic. You didn’t know? Yes, it’s absolutely obvious. Me too and I knew instantly you were. I assumed you’d been diagnosed years ago… and so on and so on and so on. Some of these people have known me in person for decades, some I’ve not met but they picked it up simply from online behaviour, some hadn’t thought of it but the minute I said it they said how much sense it made and how obvious it is.

So what’s the deal? Every book I’ve ever read, every quiz I’ve ever done, every list of traits, people who know me (who I honestly expected to say “Really?” and be as shocked and surprised as I was) all scream autism at the top of their voices.

Yet the medics seem to have some sort of blind spot?

This single thing that could dramatically improve the lives and health of so many people like me is being ignored. My head is wrestling with this in a big way. I simply don’t understand. What is the matter with these people?

After a calm early evening yesterday I became very angry about it late last night. As a consequence I spent most of this morning in a state of shutdown. I was still in a fairly bad state when I finally managed to drag myself out of bed shortly after midday.

I absolutely believe that when the turmoil is settled down discovering I am autistic will be a massively positive thing and I’m very keen to embrace the positive bits and find out what my strengths actually are (the things I can really do, not the things that I’ve trained to do but are counter to my natural aptitude and achieved through immensely hard work) and how I can make a better life. Since I always was autistic and always will be, I might as well make the best of it and learn how to look after myself properly, using appropriate strategies to compensate for my impairments while positively embracing any strengths I might have.

However, I also want to tell the truth. Getting up and trying to achieve something today was tough. And I share the words below partly because they are the truth, but also because someone else might need to read them sometime and know that they’re not alone. Positivity has a great place in the world. But sometimes it is more comforting to know that somebody else understands.

Slow Start

My head isn’t working right.
Everything is irritating me.
Not at ease with the world.
The thought of doing anything, impossible.
Annoyances from the last few days racing round my head.
Anger and frustration.
My legs and feet tense, moving back and forth.
Picking my skin. Chewing my fingers.
Almost paralysed on the sofa.
My brain knows there are things to do.
I cannot reach them.
There is me, and there is everything else.
Noises surround me.
I am anxious and edgy.
Thoughts fragmented.
Speech great effort.

I need to meltdown.
To press the reset button.
But it can’t be made any more than stopped.
And I am stuck.
Searching my mind for a way to feel better.

I shuffle to the fridge.
Get a “breakfast drink”
And sip the cold liquid through a straw,
Rocking on the sofa
While the weatherman on the telly
Gives the early afternoon forecast.

Movement isn’t working.
So try compression.
I wrap myself tightly in neoprene supports.
And the pressure begins to work.
And I start to calm.

It is three in the afternoon.
I am almost ready to start the day.